They were 45 years old, lived together, worked as cobblers, and used home signs to communicate with each other and their family. From this, I assume they weren’t connected with the Belgian Deaf community (Fevlado). They were born deaf, and a few years ago started losing their vision to a genetic form of glaucoma. It was reported that they would have, within a short time, become completely blind.

Marc and Eddy Verbessem

They searched for 2 years to find a doctor, and they fought for the legal right to be euthanized. (Belgium law allows physician-assisted suicide, but usually the patients are terminally ill.) Their family was against it, but were finally convinced that this was what they wanted. One of the reports said the twins were concerned about being a burden on their family. They were also worried that they would be institutionalized if their parents died before them.

It is not my place to judge or second guess them. I wouldn’t want anything that I said here to bring any more grief to their family. If they have been fighting for this for a few years, they had time to change their minds, and others could have intervened to show them other options. The one thing that was clear to me in what I read was that their minds were made up. But the rest of the story just didn’t feel right. It is an easy mark for sensationalism because it is controversial. Do you support doctor assisted suicide? Would you support it in the case of terminal illness? What if you had a condition that would make life intolerable?

I know that isolation and loneliness can be intolerable. A friend of mine with genetic hearing loss in her family told me how several members of her extended family had committed suicide over the years when their hearing loss had become severe enough that they were cut off from family and friends. These people weren’t connected with a hearing loss community, weren’t aware of other technology beyond hearing aids, and weren’t connected with anyone who could tell them that there were options for coping. Even though they had jobs, maybe Eddy and Marc didn’t have a community outside of their family. Isolation could have been a very real fear for them.

I don’t know what the services are like in Belgium. For that matter, services in the US for people who are deafblind leave a lot to be desired. Imagine having only an hour a week of a support service provider (SSP) who can help you with shopping and interacting with the world. The truth is there are plenty of deafblind people in the US who would be thrilled to have that much time with an SSP. Many states don’t provide any, and even if they did, there are not always enough trained people who can provide the service. If Eddy and Marc were using home signs, that would have made it more of a challenge to find SSPs who could work with them.

I also know families who are worried about what will happen to their adult son or daughter with a developmental disability when the aging parents who are supporting them are no longer able to care for them. I’m not making light of their concerns. Eddy and Marc’s reported concerns could be very real.

The thing is, there just had to be more to the story. I couldn’t imagine that two people who were creative enough to develop their own language between them couldn’t imagine other solutions for themselves. After doing quite a bit of searching I finally found out the brothers also had other serious physical issues they were dealing with (http://deafcapital.blog.com/2013/01/16/the-belgian-twins-euthanasia-and-the-myth/). One had spinal damage so severe that getting around was difficult for him, and the other had to sleep sitting up because of respiratory problems. One had just had surgery on his heart. There were limited medications they could take because of the glaucoma.

That’s the sticking point. They did not wish to die just because they were going blind. They were dealing with multiple health issues. The media reports I found took it for granted that it is reasonable for anyone who is deaf and blind to wish for death. The subtext is that such a life would not be worth living. If Belgian law stated that anyone who wished to die for whatever reason could seek out physician-assisted suicide, that would be one thing. But the media reports wrongly stated that the twins were able to convince a doctor to euthanize them because they were going blind and that being blind in addition to being deaf was intolerable to them. This is not what happened. The media either wanted this to be the story, or thought that was the story the public wanted.

The media is playing a dangerous game when they take such liberties. If you are posing the question of the acceptability of euthanasia in the case of an intolerable condition, the real question is, “Intolerable according to whom?” What if you have a condition that would make life intolerable in the eyes of others? How marginalized would you feel if, because of the tone of these stories, people were now looking at you as if your life were intolerable? At some point, will it justify others making euthanization decisions for you? Which is worse: euthanization or simply being locked away? What about sterilization? The days when this was true are not that long ago (and I’m sure are still true in many places. There are many stories of children with disabilities being kept locked up.). I am not against doctor-assisted suicide, as long as it provided after a well informed decision by the individual. The problem for people with hearing loss is that there is a history of bias in what information is given to them and their families. The media is perpetuating myths and stereotypes about life with disabilities. It can and does result in policy driven by misinformed public opinion that affects millions.

I haven’t focused a lot on the specifics of hearing assistance technology in this blog, but I can’t think of a better item to talk about than the telecoil. Wait, really? Isn’t there something sexier to talk about?

No, not really. This simple, unsung hero of an option on a hearing aid or cochlear implant can make the difference between tuning in or tuning out. Hearing aids and cochlear implants may be very effective in quieter settings, but when noise is introduced, the hearing device alone may not be able to adequately create a satisfactory signal-to-noise ratio. For people who have a hearing loss, the sound that they want to hear (signal) needs to be significantly louder than the surrounding background sound (noise) in order for it to be understandable. Although hearing aids may have some technology to reduce background noise, it can also compromise the speech signal. This is why using an additional assistive listening device (ALD) is so important. Telecoils are a simple option to hear better on the phone and to connect with ALDs.

How Telecoils Work

To understand how telecoils work you need to know a tiny little bit about physics. A wire with a current running through it naturally gives off a magnetic field. If another wire is placed near it, the magnetic field in one induces a field in the other. Magnetic fields carry signals. Sometimes the information is disorganized (e.g., static), and sometimes it is organized (e.g., music or speech). Telephone and stereo speakers give off this magnetic field unless the equipment has been shielded to prevent it. In ALD terms, an induction loop is a loop of wire connected to a sound collection system (like a microphone and amplifier) that gives off a magnetic field carrying speech or music signals.

So what’s that got to do with hearing aids and cochlear implants? Well, the telecoil itself is a small metal rod wrapped in wired (oooh…see where this is going?). Telecoils were first put in hearing aids to assist in hearing on telephones when it was realized that they could take advantage of the leakage of this magnetic field that telephone speakers emit. The user simply flips a tiny switch on the hearing aid to turn it on. When the user places the phone speaker near the telecoil, the signal is picked up (i.e., the magnetic field from the phone induces a magnetic field in the hearing aid telecoil) and the hearing aid converts it to acoustic sound waves, amplifies the signal according to the individual’s hearing aid prescription, and sends the new amplified sound into the ear canal. Cochlear implants now have telecoils, and some telecoils automatically come on when a magnetic field is brought close to the ear.

The trick is to get the best signal reception from the telephone speaker to the hearing aid. The phone earpiece might need to be moved around the hearing aid to get the best reception. For example, early hearing aids were often body worn, not the compact components worn behind or in the ear. This means that the telephone speaker would be put over the aid (even if it was in a shirt pocket or hanging around one’s neck), not over the ear for this signal reception with the telecoil.

How Telecoils can be Used

If hearing better on the phone isn’t enough, telecoils are an exciting option because they can also be used with a variety of ALDs. If a room or area is looped with an induction system, the user does not need any additional equipment besides the hearing aid to enjoy improved listening. As long as someone is speaking into the microphone attached to the system, the signal will be sent out from the loop of wire through the magnetic field. Newer induction systems come in a variety of styles, such as free-standing small panels, chair pads, and floor mats that can be used in a variety of settings. See Beyond Hearing Aids for some examples.

Even if the room isn’t looped and an FM or infrared system is being used, a telecoil can be useful. For people who need more amplification, removing their hearing aids to use headphones to listen through an FM or infrared transmission system is not a viable option. They need the specialized amplification provided by their hearing aid prescription. Covering the hearing aid ear molds with headphones can result in feedback. Listening through a neckloop and telecoil prevents this. A neckloop is a coated wire that is worn around the neck and plugged into the headphone jack on the FM or infrared receiver. Like its room loop big brother, a neckloop gives off a magnetic field that is picked up by the hearing aid telecoils. For people who can’t use headphones or who would prefer a more discrete set up than headphones, the neckloop is a desirable alternative.

Get in the Hearing Loop Campaign

A movement started in Holland-Zeeland, Michigan by David Myers to Loop America is spreading. The Hearing Loss Association of America and the American Academy of Audiologists worked together to help consumers and professionals Get in the Hearing Loop. I was honored to be invited to participate in this committee, and helped to develop the informational brochure on Assistive Listening Devices. Those interested in looping Oregon should contact Duane Smelser www.yourhearinghealth.com.

If you are working with someone who is getting ready to purchase hearing aids, or if you know someone with cochlear implants or hearing aids who has trouble hearing in noise, make sure he or she is aware of the inexpensive telecoil option. The consumer needs to advocate for this, as audiologists may not realize that the individual will be using ALDs. Especially in newer hearing aids and cochlear implants, the telecoil must be programmed. A great deal of confusion stems from consumers trying to use it without checking with the audiologist first to be sure that it has been activated and that it is adequately powered to provide a strong enough signal.

I can’t believe the difference this has made in my life. You can’t imagine what a relief it is to me to drive home after a day of classes and be headache-free. For the first time, I feel I can be successful in my coursework…or even a career.

These are the comments of “Mary,” a college student.

Understand, my family often became frustrated in trying to communicate with me. I always thought that if the people who loved me most had problems talking to me, why would a teacher or employer take the effort with me. But this changes everything. If I had had this equipment when I first went to college, I might already have my degree now and the whole course of my life would have been different. I have to admit that even though I am thrilled with the difference this has made for me, once in a while I feel sparks of anger that no one told me about assistive listening devices before now. I’ve been wearing hearing aids since I was a child, and I’m just now finding out about them? Explain that one to me.

Mary’s discovery began when she went into the Disability Services Office at her college and requested a tape recorder. Being hard of hearing, understanding class lectures was a struggle even though she had hearing aids and used speech reading. Mary had never thought of herself as disabled, and had always managed on her own without help.

In my dreams I fill this room with people wildly interested in ALDs

Recently, though, she was beginning to recognize it took a lot of energy for her to keep up in class. After doing poorly on a test that she thought she was well prepared for, she decided she needed help. Even though it would mean taking more time from her family, she knew she would not succeed in her classes if she did not do something. Reviewing the lectures seemed to be her only option, thus the request for the tape recorder. She reasoned that if she couldn’t understand it, maybe her husband or daughter could repeat what was said for her so that she could understand it.

The disability services coordinator had served students experiencing difficulties similar to Mary’s in the past. She spent a few minutes talking with Mary about her problems in class to determine the kinds of accommodations that might be useful to her. She was delighted to find out that Mary done several positive things to advocate for herself, such as talking with her professors to let them know about her hearing loss, sitting near the front of the room to hear better and to improve the line of sight for speech reading, and that she was a long-time user of hearing aids. She also found out that Mary was not familiar with assistive listening devices (ALDs), but was willing to try. She related the following:

I brought out the FM transmitter and receiver. I pinned the mic to my lapel, and gave the receiver and headphones to Mary. With my back to her, I asked if she could hear me. When she didn’t respond immediately, I though maybe her hearing loss was too severe to benefit from the system. I turned to see Mary looking shocked and tearing up. She exclaimed that it had been years since she was able to hear someone without seeing their face to speechread. It was a very emotional moment for her.

After discussing her particular class settings and needs, they decided on a microphone system and listening option that would work for her. The Disability Services Coordinator gave Mary and her professors instruction on using the devices, and provided them with a tip sheet for trouble shooting.

Requesting Services

This is not just one student’s story. Many people could benefit from assistive listening devices, especially in group settings such as classes, religious or spiritual gatherings, work meetings, and even family gatherings. Hearing aids are not required to benefit from these devices. They can also benefit cochlear implant users, especially in settings with background noise.

If you are a student at a public institution of higher education and you have a hearing loss, you may be eligible for assistance. In college settings, that assistance may include assistive listening devices, notetakers, interpreters (oral or sign language), and/or a speech-to-text service, depending on your hearing needs, the listening requirements in the class (e.g., group discussion or lecture), and the amount of specialized terminology in the course.

Identify yourself to the disability services coordinator on your campus. If you have trouble identifying this office, contact the ADA (Americans with Disabilities Act) coordinator and ask what office provides accommodations for students with disabilities. You will be required to show documentation of your hearing loss and describe how your hearing loss impacts your ability to access communication. In advocating for yourself, you should be able to describe to the service provider what situations you hear well in, what situations present the most problems, coping skills you have developed for various listening situations, and your preferences for accommodations. The more you can describe what helps you and why, the more likely you will be to receive that accommodation or one that achieves equivalent results.

Many, many hard-of-hearing students go through school on their own without requesting accommodations. They enter college using the same coping tools they used in high school, and find out the hard way that it is very different. The school service provider may have never served a hard-of-hearing individual before, especially since many never ask for services. If this is the case, or if your service provider is not familiar with ALDs and is struggling with how to provide accommodations for you, suggest they contact an office of the nationwide network that provides technical assistance to programs serving hard of hearing and deaf individuals: pepnet 2 (http://www.pepnet.org or 503-838-8642).

About This Post

This is a revised version of an article I wrote over a decade ago for the WROCC Express, the newsletter of the PEPNet Regional Center serving the Western US. (Over the years, WROCC became PEPNet West, and today there is just one center serving the entire US (pepnet 2) rather four regional centers.) It is based on a true story I heard from our Disability Services Coordinator, and it is just as true today as it was then. Many people who are hard of hearing have never heard of assistive listening devices and are unaware of the benefits of them, even though they have been seeing hearing health professionals for years. The question that still begs to be asked is “Why?” or maybe “How?”. Most hard-of-hearing adults I know learned about ALDs through consumer groups like the Hearing Loss Association of America. If there are some 36 million people in the US with hearing loss (approximately 17% of the population), and 10,000 people are members of HLAA (this number was from 2004), there are a whole lot of people out there who haven’t gotten the word yet, and whose quality of life could be greatly improved with this technology.

Position Description link. Please help us get the word out about this opening in our Special Education graduate programs! The Division of Special Education at Western Oregon University seeks qualified applicants for a full-time, 9-month, tenure-track Associate Professor and 12-month appointment as Division Chair. The Division Chair term is three years and rotates among the faculty. The WOU academic year is based on quarters.

PRIMARY TEACHING RESPONSIBILITIES

Primary teaching responsibilities are in the Special Education graduate programs. Summer teaching opportunities may be available. The Special Education Programs include a Master of Science in Education: Special Education, an Early Intervention/Special Education I and II endorsement program, and a Special Educator I Endorsement and Special Educator II License. The program is especially interested in recruiting a faculty member with expertise in teaching methods for low incidence disabilities (e.g., medical aspects, managing communication systems, transition) as well as on-line program development.

CHAIR RESPONSIBILITIES

The Special Education Division is a multidisciplinary division with ten tenured/tenure track faculty and approximately twenty NTT faculty offering four graduate programs, two undergraduate programs, two minors, and two certificates. These programs include:

MS: Education in Special Education

MA in Interpreting Studies

MA in Rehabilitation Counselor Education

BA in American Sign Language Studies

BA/BS in American Sign Language/English Interpreting

American Sign Language Minor

Special Education/Rehabilitation Counseling Minor

Rehabilitation Counseling with Deaf and Hard of Hearing Adults Certificate

Autism Spectrum Disorders Certificate

Additionally, three full years of American Sign Language courses are offered in the Division, and all but one of the faculty teaching these courses is Deaf. Approximately 250 undergraduate students take ASL each year. The courses can be used to fulfill the foreign language requirement for BA degrees.

The Chair is expected to foster excellence in teaching, scholarship, and outreach for Division faculty, staff, and students; support faculty to expand their programs; and to work collaboratively in establishing future directions for the Division and program innovations. For example, the Division is currently seeking to reopen its Deaf and Hard of Hearing Educator program, which has been on hiatus since 2008. The Division Chair would play a key role in efforts to gain approval and to implement the revised program.

DSE faculty, staff and alumni were among 30,000 who took part in the annual Shamrock Run in Portland, which benefitted Doernbecher Children’s Hospital.

ADDITIONAL INFORMATION

You can find out more information about the Division of Special Education by going to http://www.wou.edu/education/sped/index.php. You’ll find links to the programs there, as well as information on faculty activities and news of special events. WOU is home to other exciting programs that support professional development in working with individuals with disabilities including the Regional Resource Center on Deafness www.wou.edu/rrcd, Teaching Research Institute www.wou.edu/tri , and the Center on Sensory Disabilities www.wou.edu/tri/sensory.

Position Description
Please share with interested parties: Western Oregon University (WOU) is seeking applicants for an Associate Professor position in our Rehabilitation Counselor Education Program (RCE). The position is full time, tenure track, 9 month. The WOU academic year is based on quarters. The RCE program was first established in 1974 and is one of the longest standing programs on the west coast. The program began as an RCD (Rehabilitation Counseling: Deaf Focused) program and expanded to include the RC (Rehabilitation Counseling general) cohort in 1990. The combination of both cohorts provides an exceptional learning environment for students with diverse perspectives and life experiences. The program has been accredited since 1989 and has been the successful recipient of RSA long-term training grants since its inception. Graduates of the program are well prepared and boast employment in the field with over 95% employed within six months of graduation. Please visit http://www.wou.edu/provost/graduate/msrc/msrc_about.php to find out more about the program. Additional campus training programs that support professional development in working with individuals with disabilities include the Regional Resource Center on Deafness www.wou.edu/rrcd, Teaching Research Institute www.wou.edu/tri , and the Center on Sensory Disabilities www.wou.edu/tri/sensory

See also student videos about their experiences in the program: Student Videos

Like this:

When I got an iPad for work, I was so excited. I thought my productivity would skyrocket. And while it has been useful, I was really, really frustrated by a couple of programs that I used on my computer (Evernote and Pinterest) that I couldn’t use on the iPad. What was really frustrating was that the iPad is where I do most of my web browsing, so it was really counterintuitive that these two iPad apps wouldn’t have all their functionality.

I get a lot of e-mail newsletters. I used to print up the interesting articles that I saw so that I could get the e-mail out of my inbox. (Simply filing the e-mail in a folder wasn’t enough, because I’d have to retrace each newsletter to remember which story I had saved it for.) But then I would end up with stacks that I needed to file, and I never found the time for that. Enter Evernote. It has a feature on the desktop version that allows you to clip full webpages, just the article, or just the URL. I was in heaven! I can clip the articles, apply a tag to it to categorize it, and then get the e-mail out of my inbox. They are stored on “the cloud,” so I could access the resources anywhere. I’m actually using the resources more now, because they are organized and who has time to sift through piles?

What? You think that’s no big deal? Well, it may not seem like a big deal to you, but this is what my office used to look like. Really. I would say that it was my dirty little secret, but everyone who walked by could see it. The only thing it was missing was a few dozen cats.

The feature that I love is that you can clip the article, not just the URL, because as you know websites sometimes disappear. When I got the iPad, I thought I could be even more productive, because I tend to browse through my e-mail and websites at home. WRONG.The Evernote app for the iPad doesn’t allow you to webclip. You can see everything that you’ve clipped and saved there, but you can’t add new webclipped content. Really, iPad?? Really?? All you can do is email the URL to your Evernote account, which just doesn’t cut it.

Until now! I played around made excellent use of my resources on Linked In and found an Evernote Usergroup there. Sure enough, I’m not the only one who is frustrated by this, and someone out there has created a solution. It’s called a Bookmarklet and you use it in your Safari web browser. I am eternally grateful to Justin Lancy for posting the information on Linked In and to Chris Bray for developing these bookmarklets and posting the info. Here’s what you do:

Save the page as a bookmark (click the little arrow to the left of the blank where you type in URLs and select Bookmark).

Scroll down the page and copy the java script (in the text window) for Clip to Evernote.

Open your list of bookmarks (the book icon on the same line as the arrow).

Tap edit.

Tap the bookmark for that page. It will be called Adding Bookmarklets on iPad and iPhone.

Paste the javascript into the field for the URL.

Edit the name to something like “Clip to Evernote”

Voila!

Now when you have a website open that you want to clip, all you have to do is, pull down your bookmarks and tap the Clip to Evernote bookmark. It will ask you if you want to clip the page or the URL. If you aren’t logged in to Evernote, it will ask you to do that first.

I’m a new woman!

He developed bookmarklets for pinning things in Pinterest, and several other programs. I use Pinterest to store graphics and videos that I use for classes. Again, I couldn’t do this on the iPad and it was driving me crazy! I feel like I’ve been to Santa’s Workshop!

Like this:

I love getting together with family over the holidays. I enjoy reconnecting with everyone and always learn new things…recipes, tips about using an iPad, or websites like Pinterest. This year it happened to be why kindergartners need to be reassured that there are no zombies hiding in the ditches next to the school. Apparently, older teens like to watch a series called “The Walking Dead,” and then they scare their little brothers and sisters with stories of zombies. Then those children bring the stories to kindergarten and scare other kids, so much so that one teacher wrote a note to parents in the school newsletter that started off with something like “If you are wondering why your son or daughter came home with a story about how I helped them check the ditches for zombies, here’s what happened…” Kids are even playing Zombie Tag on the playground.

My sister-in-law (who was telling the story and is a reasonable and normal person) is a fan of the show, so we went out and bought the first two seasons. I never thought a series about zombies would keep my interest (a movie, maybe, but a whole series??) but it turns out this is a really good show. The salesperson at the checkout counter said “It makes you think, “What would I do if there were a zombie apocalypse?”” Although in my mind I snickered smugly and unkindly at her statement, I’ll be darned if that’s not exactly what I wondered after chewing through one and a half seasons over the long holiday weekend. (Warning: The series is graphic. After all, to kill a zombie you do have to shoot for the brain! And zombies eat only live people. ‘Nuff said. )

Roaming zombie herd, not my family gathering!

While this one interaction at Thanksgiving has led to hours of entertainment for myself and my partner, family gatherings (or any large get-together) are something that lots of hard of hearing people dread. It’s a challenge to communicate under normal circumstances, but with background noise, music, television, and lots of conversations going at the same time, what is a happy gathering for others is often very stressful for people with hearing loss. Isolation, withdrawal, and depression are big problems for people experiencing hearing loss. Unfortunately, the very gatherings that are meant to help build connections can increase these negative feelings when communication goes awry.

Imagine, you are surrounded by family and friends, can’t understand 3/4 of what is being said, are laughing (or not laughing) at jokes you didn’t hear, and are praying that no one will single you out for conversation requiring a specific response. First, how do you feel? Stressed? Tired? Depressed? How do you cope? Do you try to be polite and fit in? Maybe you try talking a lot so that you don’t have to respond to anyone. Or maybe you sit in front of the TV to avoid any conversation at all. Without letting others know the reasons for these behaviors, they are left to their own devices to interpret what they see. Hearing loss is probably not the reason they’ll come up with for your behavior.

It’s not surprising that family members don’t really know how to respond when very often the hard of hearing people themselves don’t know what to ask for. Sam Trychin is the guru of communication for people who are hard of hearing. He has a series called Living with Hearing Loss http://www.trychin.com/hearing_loss_series.html that includes the book Communication Rules. There is a free preview available on the website, too. It’s not just a few tips, it is a workbook that helps people learn how to advocate for their communication needs (something that we might all find useful!). Effective communication is a two-way street, and requires changes in the behavior of the speaker and the listener.

As you plan or head out for your next holiday celebration, here are a few tips.

If you are hard of hearing:

If you can, find a quiet place away from the noise to talk. You might even ask the hostess if there is a spot he or she might recommend. If you host the party, there are even more variables under your control!

Keep a small pad and piece of paper with you to at least get the context or topic, if not the whole sentence.

Avoid asking “what?” Instead, repeat what you think you heard and ask about the specific part you didn’t hear. The misunderstandings can be quite humorous. A little laughter often helps put people at ease.

Let people know that what they are saying is important to you, and that you want to understand them.

Check on-line for tips for dealing with holiday gatherings. It is a common topic on listservs among people who share the experience of hearing loss.

Try out a personal sound amplifier like a PockeTalker or a Sound Wizard. People speak into a small microphone and the sound goes to headphones, earbuds, or straight to your hearing aid if you have telecoils.

If you are talking to someone who is hard of hearing:

Don’t talk with your mouth full or put objects in front of your mouth when you are speaking.